ALS patient from Lexington dedicates remainder of life to research for a cure
Sandra Marlowe, a Lexington ALS patient gives an update on clinical trials
Lexington, ky. (wtvq) – ALS, a disease often known as Lou Gehrig’s Disease is an infamous nervous system disease with no known cure. Families who deal with the dreaded diagnosis may have just gotten another ray of hope. The U.S. Senate passed legislation establishing grants for diseases such as ALS
ABC 36 News has been following a family in Lexington, the Marlowes, who know the disease’s pain first hand. The family’s matriarch, Sandra Marlowe has never taken a moment for granted. It’s because her progressive disease measures the time she has left like the sand in an hourglass.
Marlowe was first diagnosed in March of 2020. ALS has caused a world of change for this once active and competitive athlete. When we last spoke to her in august, she had more mobility, could speak clearly, and eat some foods orally. Its been a few months later, but many elements of her lifestyle have changed. Every day Sandra uses a cane and a chair lift to go up and downstairs.
Her joints are starting to grow weak.
“My hands are starting to curl up but I have one pointer finger I can still point with one,” explains Marlowe.
Her speech is no longer as clear and so her daughter Rachael now translates for her.
“It takes your voice so quickly and swallowing,” says Marlowe.
Sandra has been using a feeding tube since February of 2021. At first, she still could eat some solid foods, but that’s also changed. Eating or drinking anything by mouth now causes choking…Even just taking a sip of water is too dangerous. Sandra now gets nutrients from a liquid diet through a tube.
“She was still finding herself very hungry and even between feedings, it was not satisfying. So she did some research to see which foods are the most satiating and she found that potatoes are known to be the most satiating. Typically what we give her to help keep those hunger pangs at bay are just dehydrated potatoes nothing else in it and then we mix it with some dried milk and hot water and whole milk to get the calories in there,” explains Rachael, Sandra’s daughter.
Feeding her often requires a second person, including her young grandchildren sometimes
“It’s hard because I would rather be feeding them, but because they’ve become witness to the effects of ALS, I believe that they’re learning how to see the world for what it is,” explains Marlowe.
For almost two years, the disease has slowly consumed her life. Her family, which go by the name “team Marlowe” has kept her steady and balanced. They’ve been her biggest cheerleaders while she’s helped science find a cure through clinical trials. For almost a year Sandra’s been injecting special medicine into her body. Doctors believe it has slowed progression.
“I truly believe that I wouldn’t be alive right now if I haven’t participated,” says Sandra.
The potential federal grant money would help fund 100 million dollars annually for the next five years to companies producing these clinical trials. Before Marlowe was diagnosed she admitted that she didn’t know much about ALS And that it had been in the shadows for a long time. She hopes the new legislation will be another step toward changing that and possibly finding one or more cures.
“We need several different types of medications to treat ALS. It’s a disease that has many different ways of affecting the body. While Sandra knows the odds of a cure for her aren’t in her favor, she says that every day she has from now on is a gift.
“There’s always something to be thankful for and you have a choice every day you can focus on what you lost or be grateful for what you still have,” Says Marlowe.